A Keynote Speech from Eliza Hull.
Delivered at The Forum Theatre, on March 22nd, 2023 as a part of the One of One Women and GNC people in music event series for the Music Industry.
One of One is part of On the Road Again, a Victorian Government initiative to bring live music back across the state.
To begin I would like to acknowledge the traditional owners of the lands on which we’re meeting today, the lands of the Wurrundjeri People and Woi Wurrung people of the Kulin Nations, and pay my respect to their elder’s past, present and emerging. I extend that respect to any Aboriginal or Torres Strait Islander people in the room today. I acknowledge that we are on what always was and always will be Aboriginal land.
I didn’t grow up disabled. I grew up with a problem. A problem that those around me wanted to fix, that I grew to want to fix too. I was raised in Wodonga, a regional town 300 km northeast of Melbourne. I remember when I was five years old; I started falling over at school. I can vividly feel the rocks that got caught in my knees; the warm blood that would drip down my leg, the numb, tingling sensation, my knees grew strong and firm. There were doctor’s appointments, hospital visits, questions, confusion and never any answers. After each surgery, I watched red blood seep through my plaster casts, the hospital fairy would blow bubbles while I lay, celebrity footballers visited, and everyone constantly talked about me, not to me. My parents organised several surgical operations throughout my childhood. The aim was to make life easier, which in reflection, as an adult, I can understand that this is what every parent wants. They just cared, ultimately trying as hard as they could.
I was finally diagnosed with a neurological condition ‘Charcot Marie Tooth.’
It affects the way I walk, I fall over regularly, have muscle and sensation loss throughout my whole body, and am often in pain and fatigued. Stairs are very hard, and impossible without a railing.
At the time of my diagnosis, I also started singing, by chance I was walking down the corridor at school and my music teacher approached me, ‘Eliza, would you consider being part of the local eisteddfod?’ she asked. The next moment I was beside the piano singing, a wave of emotion overcame me. I felt like I had found my purpose.
As the years went on, I would describe my disability as a problem, when a shopkeeper, stranger, or new friend would ask, “What have you done to yourself or ‘What’s wrong with you?” I would sometimes make up stories, but most of the time I would reply that I had “a leg problem.” Because that’s what it felt like ‘a problem.’
During my teenage years, I felt inadequate, and painfully different. When I was about to have my second and then third round of surgery, I tried to create an escape, so I lied. The week before the surgery, I announced with confidence to my friends, that I was going to be fixed, and that the surgery was going to make me walk straight. I wanted it so, so badly that it almost felt real. My friends created a book of well wishes, and everyone said how exciting it was going to be to finally see me run; to be able to get upstairs, and to walk properly. One friend wrote, “I can’t wait to be able to finally do sport together.” Of course, this is all innocent, we were young, and all of us wanted desperately to be ‘normal,’ and to fit in. The weeks after the surgery, I let all the ‘cool’ students at school take my wheelchair at lunch time, they raced with it down the hill, I used to sit out on the oval, feeling stranded, my accessibility was gone. Though strangely, it felt good, like they were validating who I was. I used a wheelchair on and off throughout school. After this I started using crutches and splints on my legs. I remember mum taking me to the shoe shop to see if I could buy some new shoes to fit my splints. There were a lot of tears that came that day, I tried to hide them, but they poured like an overflowing ocean at high tide. I had one shoe that was my standard size, and one that was three sizes bigger, the tongue of that shoe also had to be cut to fit my foot and splint in. When you’re fifteen and all you want to be is accepted, this was hard.
During those months, in the thick Australian summer, most days hit forty degrees in the shade. My first day back at school after the summer school holidays, I wore the oversized shoe with long pants to hide the splints. I was embarrassed to be me.
I didn’t want to be seen, I wanted to fit in, and be accepted, I wanted to hide, to fix it, to make it go away.
In drama class there was a boy who asked if I would be interested in coming to his church, it would be full of people who could help me. “I think if we go, there would be a real chance that we could fix your problem,” he smiled. A wash of relief swept over me, I was suddenly floating, weightless, for that whole day I believed I was going to be finally fixed.
We drove down dusty roads, under pink clouds; I sat in the back seat singing along to the radio. The church building was old and weathered; in it was a mass of people having lively conversations lit by candlelight. I wanted to be inconspicuous, so I stood behind a group of people within the rows. “Before this service is finished, we have a special visitor who has come for us to pray for them,” the pastor said as he looked at me. I walked anxiously to the front of the church and was quickly swamped by a group of people like a swarm of bees, each of them chanting and praying. It got louder, and louder, hands were touching my back. I felt overwhelmed, suffocated, and overcome by a feeling of sickness in my gut. Why was I here? They wanted to fix me, because I had let them believe this is what I wanted. And why did I want this? Because I lived in a world where I wasn’t accepted. Where difference was feared, not celebrated. Of course, the next morning I woke up and I wasn’t fixed. Funny that.
If I am completely honest, disability was something I was deeply afraid of, the word, the association, the assumptions. I had a lot of internal ableism going on. That’s because my teenage years, there were times where I was laughed at, and made fun of.
My solace was spending my lunch time on the piano in the music room at school, I wrote songs and sang to deal with the big emotions. Music was always there for me, it enabled me to process and unwrap my often-complex feelings. One night I watched the high school rock band rehearse after school, I felt such a mix of emotions as the lead singer jumped around on stage. I was in awe, but it also felt complicated, I wondered if I didn’t move like them would I be accepted as a musician, could I make a music career if I was disabled?
As a teenager I would watch Rage and Video Hits and turn my kitchen into a backstage area and the lounge room as my stage. I spent my weekends listening to the greats and singing along. I knew deep down that if I was going to make music a career, I would have to hide my disability. I couldn’t let anybody know. I’m not sure how I knew that then, but I felt underrepresented in the music industry, which fed into the belief that disability is something I should pretend doesn’t exist. I also knew very early on that artists, especially during this time were expected to look a particular way, dance a particular way, move in the world a particular way, and I just didn’t fit.
In the year 2000, I was listening to Silverchair, Carole King, The Beatles and Killing Heidi.
I remember one evening watching the ARIA awards on TV, my whole family spread out across the lounge room. My favourite band at the time was Killing Heidi, and they were nominated for multiple awards. I felt myself buzzing with excitement.
I’ll never forget watching them win, my face lit up with awe. They were like me; young teenagers from a regional Victorian town who loved to play music and write emotion-fuelled songs.
I had big dreams of one day winning an ARIA, but I remember realising at that moment that, whilst winning an ARIA might be possible, I wouldn’t be able to accept the award. That’s when I realised that the world, I lived in was disabling.
Watching Killing Heidi run up and down multiple stairs without railing to accept their award sent me a strong message. That the music industry was not built for someone like me and that it would be best if I do everything I can to hide it.
At the age of 18 I moved to Melbourne after school, I started writing and releasing my own music.
When I began meeting with prospective agents or managers; I would sit at a cafe table and wait for them to arrive so that I didn’t have to walk in front of them. I was afraid. I feared that if they saw me walk, I would not get the opportunities I wanted, that I wouldn’t be taken seriously.
I remember years ago going to meet my publisher, their offices were on the fourth floor, so instead of getting them to let me into the building, I rang a different doorbell on another level, pretending I was seeing another business, so I could pull myself slowly up the stairs without the publisher noticing.
When I started regularly gigging, the stages weren’t accessible so I asked my band mates to pull the curtain so nobody would see me crawling onto the stage, or I would have to get them to carry me up, for so long I was embarrassed of who I was. It was hard arriving at a venue that I thought was accessible and then realising that their backstage was five flights of stairs so my band mates would be able to go up without me or I would need to be carried. At the time I wouldn’t tell a venue I was disabled, instead I just hid it. Even my booking agent at the time who worked for me for years never knew I was disabled. I would always sit when we met.
This hiding became incredibly draining. Physically, life can feel heavy due to my disability. Though emotionally, I was feeling heavier than ever.
I look back at that time and wonder why I would feel the need to hide. I grew up in a supportive, loving family who made me feel like anything was possible, yet I still believed that disability was a deficit and a negative, this was due to under representation.
How often do we see disabled people in movies, on TV, or hear their music on the radio? Twenty percent of the Australian population has a disability, and disabled people are twice as likely than non-disabled people to create art, write, and perform music, yet often we were nowhere!
I remember once visiting a producer in a suburban Melbourne studio. He was writing with emerging artists and noticed the way I walked, he recommended I “keep my disability on the low down, just in case, you don’t want your audience to think you’re actually disabled”. A wave of shame overcame me. I nodded in agreeance.
Now I’m at a completely different point. Disability is a huge part of my life. I’m a proud disabled musician. I have just finished an EP, and a lot of it is about my disabled identity, I spend my time advocating for the change I want to see for future generations of musicians in Australia.
As Australian disabled musician Martha Marlow puts so perfectly, “Disability is something that deepens your spirit tremendously. And it turns up in every note, even when perhaps you’re singing or writing songs about other positive experiences.”
The music industry does have a long way to go, but bit-by-bit I am starting to see the change I had hoped for when I was a young teenager.
Representation is starting to happen.
Quotas are being set, and venues are taking the time to think about how they can make their spaces more accessible and inclusive for musicians and audience with disability.
The pandemic showed us ways we can include more people with disability through streaming live music. For many people with disability, or chronic health conditions it meant we were finally able to access live music from our homes.
I hope the music industry keeps this option for future shows. Of course, live music needs to resurface in venues, but streaming still has a huge place in the future.
Live music venues are starting to incorporate Auslan interpreters for people who are Deaf or hard of hearing, audio descriptions for people who are blind or have low vision, relaxed performances for people who are neurodiverse, which also end up being more inviting for many, including families and pregnant people.
Non-disabled artists are beginning to reach out to disabled artists to play a show together. There are even non-disabled artists who are stating they won’t play inaccessible venues anymore. This solidarity is noticed.
The real ‘aha’ moment for me was becoming aware of the social model of disability, it says that it’s not up to me to be fixed, instead it’s up to the world to change, to make the world accessible, inviting and inclusive for everyone.
I feel the most disabled by my environment when I am not let into a venue because they think I am drunk, or when people in a venue speak to my partner instead of speaking to me, or when I am stopped and prayed for on the streets, or when I can’t get up onto a stage to perform. I am disabled by physical barriers and the attitudes of others.
My hopes for the future are simple. That we keep having these conversations, that disability is celebrated instead of stigmatised, that musicians with disability are supported and encouraged to play music, that venues ask the question, ‘How do we be more accessible?’ That labels and publishers do disability awareness training and look around their workplace and, on their roster, and ask how many people are disabled? Because disabled musical artists are everywhere, they just haven’t been able to get through the door, there is so much talent, and their experiences and song writing is important and incredibly meaningful, diversity is what makes this world beautiful.
I want music events and award shows to embed accessibility and inclusion from the beginning, and instead of saying ‘but we don’t have any disabled artists nominated so we don’t need a ramp’ they instead say, ‘we want a ramp whether there is a disabled artist nominated or not so that we make a statement of inclusion.’ This will only benefit the future for disabled artists.
My big dream is that there will be a young musician with disability watching the ARIA awards at home, and when they see a ramp up onto that stage they think, ‘That’s possible’.
